Beyond Stigma

Imagine if Lance Armstrong, Michael J. Fox, or General Roméo Dallaire had kept their respective battles with testicular cancer, Parkinson's disease, and post-traumatic stress disorder a secret. Imagine the void: the absence of dialogue, missing research dollars, and lost knowledge, political awareness, and inspiration for the general public. Instead, these individuals took the laudable stand of converting personal battles into a contribution towards public health.

Epilepsy is one illness where fear and misconception continue to wreak havoc in the lives of those who are affected. Through my older sister's battle against epilepsy, I witnessed the physical and emotional toll the disease takes.

Epilepsy afflicts millions worldwide and is acknowledged to be the most common serious neurological disorder. It also has an unpredictable public face. An epileptic seizure, caused by increased electrical activity in the brain, can take different forms. It can appear as a momentary loss of attention; a longer, almost trance-like state; or as full-blown convulsions. A major or "grand mal" seizure can cause wrenching spasms and a dramatic loss of control, so epilepsy has also been known as "the falling down disease." One might say that a seizure has no sense of decorum, since it can happen anywhere and at any time. In the West, Socrates, Julius Caesar, Alexander the Great, and Charles Dickens are all known epileptics. But despite the status of the historic list of epileptics, the disorder retains a superstitious stigma that can be devastating for those who suffer from it.

The first time I witnessed a grand mal seizure, I was 10 years old and living in Bombay, India (now Mumbai). It was early morning, still dark. My older sister Réa and I were at home, getting ready for swim practice. She was 13, a gifted swimmer and a recent gold medalist at the National Aquatic Championships. For a while she had been experiencing unexplained twitches and spasms in her arms and legs. Sometimes she dropped things. We giggled and teased her a bit, but didn't see cause for a serious discussion. That morning my sister dropped her toothbrush. A few minutes later her knees buckled and she crashed to the marble floor outside the washroom, her head missing the corner of a wooden cupboard by inches. Lying on the ground, her body jackhammered in convulsions, her eyes rolling disconcertingly to the back of her head. A force other than my sister seemed to be in control of her body. I don't recall any sound. The sight was shocking. I ran to the other room for my mother. Fortunately, my mother has a science background and grasped the situation. She sat with my sister until the seizure ended. I cannot recall if we took precautions that first time to prevent my sister from biting her tongue. I remember positioning myself near the cupboard to make sure Réa didn't hit her head. When the seizure ended, I asked if my sister was going to die. The answer, thankfully was "no."

The neurologist diagnosed my sister with epilepsy. Her seizures occurred randomly and unpredictably, but most often at night. They left her exhausted, with aching limbs, blinding headaches, depression, fear and a profoundly shaken sense of self. If that were not enough, epilepsy also left my sister and our family isolated. The doctors had recommended that my sister's disorder be kept hidden. Epilepsy in India was a taboo subject and easily misunderstood. It was feared that a seizure could be mistaken for possession by evil spirits and that my sister could suffer because of this ignorance.

So Réa's epilepsy became a secret. A full year after the diagnosis, the principal and a lone teacher were informed that Réa could have a seizure at any time in school. The secrecy was meant to protect my sister, but it also shut out potential support, comfort, and understanding. Réa was a champion swimmer who abruptly gave up swimming due to the threat of drowning. She was unable to share her loss with her peers, or even provide a logical explanation for her decision to the puzzled swimming community. When Réa had a grueling seizure on the morning of a major college entrance exam, she couldn't tell anyone there what she had just endured. She couldn't mention how tired and afraid she was, or that everything about her felt wrong. She couldn't tell others about the side effects of her epilepsy medication, which included mood swings, weight gain and changes in her personality. Réa was alone, and huge chunks of her life and the challenges she was facing remained invisible to her peers and her community.

Somehow, my sister survived the quicksand of that time. After 13 years on epilepsy medication, Réa chose to taper off her drug treatment. Astonishingly, she has been free of further seizures. She finished a Master's degree in counseling, has a thriving private practice as a psychotherapist in the United States, and is a proud mother of two wonderful children. The battle with epilepsy has had a big influence on my sister's identity and she feels that she only narrowly escaped being overwhelmed by it. In her twenties, my sister broke her silence about her battle with epilepsy. For Réa, years of unnecessary loneliness, fear and shame were finally drawing to a close.

Today, epilepsy is still fought on several fronts. The physical battle with the illness itself, the battle against misconception and prejudice, and the search for more effective treatments. Epilepsy research has been notoriously underfunded, and the translation of research into improved and diverse therapies has been woefully inadequate. Thirty percent of epileptic patients are forced to function without a treatment that can control their seizures, which dramatically affects the quality of their lives.

Amidst the gloom however, hope flickers. There are epilepsy organizations in many countries, dedicated to raising awareness and understanding of the disease among the general public. The internet revolution has brought excellent online resources on epilepsy to anyone in the wired world. And epilepsy now boasts its own celebrity: hockey star Chanda Gunn. Chanda is the face of the Epilepsy Therapy Development Project, and has battled epilepsy since the age of nine. She remains on epilepsy medication and plays goalie for the US Olympic Women's Hockey Team, leading them to a bronze medal in the 2006 Winter Olympics.

Back in my hometown, they're also starting to get it right. Bombay now has an epilepsy support group called Samman: it means "with respect."

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